I’m just about to set out on taking DMT’s. My MS has been largely benign for many years. Around 7. I have relapsing-remitting but no relapses in 6.5-7 years except when I had covid. Neuro has told me they found 2-3 very small lesions at last MRI and so we need to revisit DMTs. I have had no relapses since Dec 21. I was recommended Aubagio last year.
So I’m confused they’ve just recommended Cladribine, Kesimpta and Ocrevus. They all seem really heavy handed considering no relapses 
Does anyone have any thoughts/experiences of these drugs? I commute three times a week and have young boys. I don’t feel I can live in a world of full immune-suppression because then I can’t enjoy my time with them.
I think this is known as flipping the pyramid. It has been covered by the professor of neurology at Barts, on his blog.
"It is clear that pwMS who are treated with more effective DMTs first-line do so much better than those who are asked to wait (watchful waiting) or are escalated gradually up the DMT ladder (slow escalation). "
Case study: does treating MS early improve survival? (substack.com)
MENACTRIMS Highlights 2022 - by Gavin Giovannoni (substack.com)
1 Like
Thank you for replying @whammel however my lifestyle should surely be accounted for? I have 2 young children 5 and 8 so it’s not appropriate for me to be fully immune suppressed and the risks that would bring with school age children? Surely I have some say in my treatment?
I work full time in a hospital (patient facing), and am on Ocrevus since January. No infections. Also pretty lifestyle friendly as it’s only every six months.
You can always stop or change if it’s not the right one for you. And a serious relapse or progression will impact your time with your kids more than the occasional infection will.
Statistically speaking, kesimpta and Ocrevus give you the best chance of avoiding relapses, further lesions, slowing disability progression/brain volume loss and hopefully mean you never get to secondary progressive.
2 Likes
It’s your decision, of course, and no one will make you do anything you don’t want to do. But please do not underestimate what uncontrolled MS can do to a person’s life plans. That’s the big risk here, I think. I’m not trying to scare you, but MS can be pretty brutal, so please do be sure to take proper account of that as you decide what to do. Your medical advisors are doing their best to protect you and your future health and wellbeing.
3 Likes
Thank you @Cms and @alison100. I really appreciate your replies. I guess I’m just really scared. So far I’ve had almost 13 years diagnosed and 5 before that (at least) undiagnosed and I know statistically at 15-20 years to be as well as I am untreated is a great indicator of future prognosis but that’s not to say this evil illness can’t turn on you as mine has evidently. I’m still totally active but I guess I need to stop burying my head.
With the infusion are you fully immune suppressed or immune compromised? My MS nurse said today if I went down this route I’d need to isolate for 2 weeks after…? Also she said based on my EDSS score she was unclear why I’m being offered category 2 over category 1. I’m utterly terrified of the potential side effects especially the very serious ones. I do lean towards the infusion if it has to be category 2 but brain inflammation/death don’t sound hugely fun.
In summary I’m very scared and feeling very alone.
1 Like
You have probably seen this already, but if not, it might help a bit.
MS Decisions - drug comparison results | MS Trust
2 Likes
It’s tricky, isn’t it? There’s no use waiting until bad stuff happens to switch up the treatment - by then it’s too late and the permanent damage is done, as I know to my cost. If I had taken my head out of the sand earlier, seen that the first-line drug was no longer working and made more of a fuss, and switched up to Tysabri sooner, I would have spared myself some disabling relapses and be in much better shape than I am now. Once permanent damage is done, it’s done, and you can’t put the toothpaste back in the tube. Which is my version of the dilemma facing you now, I guess. So I’m sure you’ll understand why I jam so keen to encourage people to defend themselves against MS as effectively as they can.
1 Like
@Cms thank you for your comprehensive reply. I really appreciate it. I’m not sure I can go on drugs which make me fully immune-suppressed with two small boys. I don’t see how it works? The germs that come home from school all the time…
I honestly have no idea what to do.
I’ve used the decision tools and they pointed to Tecfidera or the infusion. But I’m unclear if I can opt for Tecfidera as the medical team haven’t given that as an option. Do I have a say?
@alison100 I totally understand your passion given that it sounds like you’ve had a bad experience and I’m so sorry for this. I think for me, so far, my relapses are very infrequent and so far in no way debilitating and this is why I’d like to opt for the lower category but I feel like I’m flipping a perilous coin. I truly believe it’s going ti be detrimental to my children if I’m immune-compromised but I totally accept far worse if I’m disabled. I feel so well and physically able and I’m so far down the line. Even the neurologist herself has said she thinks I’m in the ‘lucky 20%’ but she just can’t know. Obviously. I truly have no idea what to do. I could stay off meds and be fine. I could take them and be fine. I could stay off meds and suffer the full consequences. I could take the meds and have a serious side-effect. I have no idea which coins to flip. This really sucks!! I’m so angry right now. And I’m angry with me for not being more grateful these meds exist.
1 Like
@Cms based on what you’ve said I’m also very concerned about the advice I’ve been given and may request a change as she gave me the same advice last year and was part of my decision to defer.
@Cms to be clear are you saying I would be fully immune suppressed or I wouldn’t be because only a third of b cells are targeted? Sorry I’m wondering if I got the wrong end of the stick.
The stress from this has been a wonderful diet. I can barely eat! And my thin hair worries…why am I worrying the stress is helping if drop out nicely.
The stress has also brought on a sensory relapse. Quite a fun one (in no way) legs feel like I’m being stabbed with hot needles. This is generally the fullest extent of my relapses but never say never hey!
Thank you @whammel I have been using these extensively to research options. As mentioned earlier Tecfedira comes up as an option but DMT team haven’t considered it despite the fact I was offered this just 12 months ago and fundamentally I’m in the same shape. Neuro has said new lesions are very small and in themselves unconcerning but they do indicate activity, but I had 2 new tiny ones this time last year so similar position. I guess the only difference is I hadn’t had an MRI for 6 years but assume they have to assume they are new and not old and therefore nothing has significantly changed. It’s a minefield and I’m confused and scared and angry. Also doesn’t sound like I’ve had best advice from MS nurse.
I know I sound very ungrateful so I do apologise. I’m hugely grateful for everyone’s input and recognise how lucky I am and we are to have treatments available on the NHS.
I do sympathise with your tricky dilemma, but whatever choice you make is not irreversible, should circumstances change.
My understanding about lesions is that a small one in the wrong place can be more damaging than a few large ones elsewhere, and not everything is picked up by MRI anyway. Not very helpful, I know.
Hopefully, you get the reassurance you need and the stress levels start to dial right down.
1 Like
I agree a small one on the spinal cord she’s told me can be devastating and I do have 2 on my spinal cord so it’s not like I’m not getting them there. So I do need to be careful. Luckily for now it’s the brain so I’m in a better place than if it had been spinal.
I just feel like I’ve had a massive false sense of security and someone’s pulled the rug.
I just need to wait to 22nd I guess to hear out what’s said. Go on holiday with my babies, hopefully relax, and then make a decision.
Either way I clearly need to make a drug choice as it’s evident I can’t carry on without them.
2 Likes
@whammel @alison100 @Cms you all seem really knowledgable. I know MS can impact life expectancy but surely it’s not true with RRMS that life expectancy is 25-35 years post-diagnosis? That’s old data right? Otherwise based on MS alone I don’t even get to see my youngest turn 18 with these stats as was diagnosed at 30….I thought now MS was sort of in line with normal life expectancy maybe minus 7 years…
Really praying that was Dr Google at his worst
Hi - definitely try to dial down the stress, especially if it’s making symptoms worse. Easier said than done! But breath work / mindfulness can be really helpful here.
Yes, I meant that ocrevus doesn’t fully immunosuppress you - you still have the other elements of your immune system protecting you but it can make you more prone to chest infections, etc. Side effects more of a concern if you’re 60+/on it for 5 years+.
TBH, If you’re worried about it, Tecfidera sounds like a good option for you and worth bringing up with your MS team. I suspect they’ve offered you ocrevus as you qualify and it’s the ‘best’ available (but that’s relative as it’s the best choice for you that’s important!)
Life expectancy - that’s one of those things I don’t worry about anymore. 25-35 years post diagnosis is definitely out of date, especially as people are diagnosed earlier. Seven years less is probably also out of date given the newer DMTs, the last I read was they’re projecting 3/4 years less. But anyway, whatever it is, that’s AVERAGE - that’s if you take everybody with RRMS. Male, female, treated/untreated, of whatever EDSS. Some people will have normal life expectancy. Some people unfortunately will die of other causes - breast cancer, heart disease, etc.
You sound like you’re doing really well - you’re female, you’re young, you’ve had a long time between relapses, and your relapses/activity are mainly sensory. I think ‘a’ DMT is a good idea - make it your aim to start one in 2023 - whichever one causes you least stress to take. Get back to living your life and concentrate on making it a healthy one!
3 Likes
@Cms thank you so much for your thoughtful, respectful and balanced reply. It means more than you could know. Thank you I’m aiming to start something this year as I would hate myself if something worse happened. On more reading around tecfedira I like the look of this drug more than the infusion - purely based around the malignancy risk of the infusion. However I do feel that if I’d not read that I would’ve taken the infusion especially as not fully immune compromised. It does seem potentially a better choice overall but cancer is in my family (grandparents maternal side) but I guess it’s in most 
. So hard on the decision side but guess that’s what Monday is for. Appreciate your help